Apheresis - feedback

I just had two apheresis sessions this week, one on Tuesday and one today.

Generally, the procedure is quite easy, nothing to worry about. You are lying comfortably in a bed and can watch TV. Procedure takes roughly 2.5h, depending on the amount of plasma that is to be filtered, which is calculated based on your height and weight. Mine was 2,5 litres.

The blood is exiting the body though a small catheter placed in the vein in one arm and is re-entering in a vein on the other arm. When they start taking out the blood, they are injecting an equal amount of NaCL, to keep the volume in your body cnstant, thus avoiding blood pressure issues. The blood goes into a device that separates the plasma from the actual blood. The plasma is further passed though a filter, which filters out anything that doesn't "belong", like metals, immune complexes, excess fibrinogen, etc, etc. You can definitely see the colour of the plasma that goes in (mine was mid/dark yellow and the colour of the plama coming out (near colourless). The bad stuff is kept in the filter (which turns yellow over time) and once the filter is full, it gets drained into a medical plasic bag.

While your plasma is being washed, you get ivs with ALA, B12, folic acid (I know, I know...), B6, Glutathion, as well as homeopathic remedies supporting the krebst cycle, ATP and ubiquinol, as well as kidney, liver and lymphatic function support. ALA and Glutathion are supposed to start moving toxins around, which can then be filtered out by the machine. Worked in my case. The first day, the amount of plasma removed was around 200-250ml, around 10% of my plasma volume. I felt OK after the apheresis, but felt pretty awful the day after. Doctor told me that this is a natural reaction, since the body is now shifting toxins from the tissue into the cleaned blood, thus redistributing toxic load. And that seems to have been the case, since in the second session I had today, they removed another 200ml or so. I was amazed how in just two days, my plasma can turn that ugly again. Body works fast!

They do take blood before and after the apheresis to measure sCRP, Fibrinogen and ATP, which they compare to see if the apheresis is working and if it has any effect on the beforementioned prameters. Awaiting results.

Doctor also looked through my files and found that the SOD2 wasn't checked, so he sent that in for lab testing, since he suspects a polymorphism. They are also sending in the plasma for testing on heavy metals. Once results are in, they cangive an estimation on how many apheresis I would need for full detox. For the time being, I am just happy I got rid of the first batch of toxins from my body. What I can tell by now is that I do have a bit more energy and that indeed it fells like my blood circulation has improved qute a bit (too bad it lasts only until the body starts shifting the next load into the now clean blood). All in, postive experience, will just have to see how much the apheresis is indeed able to remove from the body once the results are back.

Hey, yes, it is a private treatment. Will try to get it re-imbursed though and will use the results (plasma, genetical polymorphisms, etc) to submit the doctor's report to the health insurance once I have the treatment plan set out. It will be a bloody fight though, as somehow in Germany, CFS is not regarded "major" enough to warrant for this. If in turn you have rheumatism or an autoimmune disease, you might get them to cover it for you......(no comment)......
Cost is quite high. First one costs around EUR 1.8k, following ones around EUR 1.5k each. So for me, it will be a matter whether or not the health insurance will pay for it and how many treatments they think I will need. If it is just 6-8, I might go for it, but if it is 30-40, well, I will consider other options. The doc is optimistic that there won't be too much in there, since I am a mere 50kg by now, having lost all the weight, but you never know how much is stored in the organs (they found cadmium in my digestive tract).

Thanks for the info Bianca.
So it seems kind of cost prohibitive, if one is self-pay.
Too bad. It's a dream therapy for a CFS patient..at least on the face of it.
Cadmium in yr digestive tract...how was this diagnosed?

Will let you now the outcome of these two apheresis and what the doc is suggesting, but yes, it can become quite cost prohibitory. One lady had to have 95 of those. Obviously, she was on the brink of dying and the insurance paid. So maybe have a few and then switch to more conventional therapies like chelation once the bigger load is down.

Cadmium was determined by a stool test. Could not believe it myself. It was without any mobilisation or something. So far had blood, saliva, urine, stool and EDTA/DMSA testing. All with different results, so am curious what the outcome of the plasma is.

Thanks for posting your experience with apheresis so far. I think this may be the only thing that can be done in some severe toxicity cases, in which the detox system is dysfunctional, especially if there are genomic polymorphisms in some of the important detox enzymes. I'll be interested to read how your tests come out on the extracted plasma fraction. This treatment is indeed very costly, though.

Could you please specify the main genomic polymorphisms which might influence a person's ability to detox?

Sandra

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Hi, Sandra.

I'm most familiar with those that are included on the Genovations Detoxigenomic Profile. They include polymorphisms in eight of the Phase I cytochrome P450 enzymes, as well as the COMT, several in the N-acetyl transferases NAT1 and NAT2, two of the glutathione transferases (GSTM1 and GSTP1), and the SOD1 and SOD2 superoxide dismutase enzymes. There are no doubt others as well, but these are the ones for which characterization has been available over the past few years.

So far I know, I have one upregulated Cytochrome (CYP1A2), but only 3 out of 8 tested. GSTT1,GSTM1 normal, but GSTP1 reduced. NAT2 normal and suspected polymorphism in SOD2. This is whatI don't understand. GST M1 is usually reponsible for heavy metals detox and that is supposed to be OK for me, but I guess a methyliation cycle block and glutathion depletion might influence the functioning of that enzyme??? I also heard that an upregulated Phase I with a dysfunctional Phase II enzyme makes for a very bad combination. Which are the eight Phase I cytochromes? Migh want to check out the rest I don't have, to make sure I understand the metabolism of medication going forward.

So far I know, I have one upregulated Cytochrome (CYP1A2), but only 3 out of 8 tested. GSTT1,GSTM1 normal, but GSTP1 reduced. NAT2 normal and suspected polymorphism in SOD2. This is whatI don't understand. GST M1 is usually reponsible for heavy metals detox and that is supposed to be OK for me, but I guess a methyliation cycle block and glutathion depletion might influence the functioning of that enzyme??? I also heard that an upregulated Phase I with a dysfunctional Phase II enzyme makes for a very bad combination. Which are the eight Phase I cytochromes? Migh want to check out the rest I don't have, to make sure I understand the metabolism of medication going forward.

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Hi, Bianca.

The GST enzymes operate by conjugating glutathione to toxins, such as heavy metals. So, in order for this to work properly, one needs functioning GST enzymes as well as a high enough level of glutathione. A partial methylation cycle block will hold glutathione down in a vicious circle mechanism. This has been found in both autism and ME/CFS.

It's true that an upregulated Phase I with slow Phase II can cause problems with some toxins, because Phase I can make them more toxic. With heavy metals, though, there is no Phase I, only Phase II. (In recent years, Phase III has also become recognized. This involves tranporter proteins that move the conjugated toxins out of the cells.) The CYPs for which polymorphisms are characterized on the Genovations Detoxigenomic Profile are 1A1, 1B1, 2A6, 2C9, 2C19, 2D6, 2E1, and 3A4. More than one polymorphism are evaluated for five of them.

Hm, thanks. I know that metals can also block enzymes of the methyliation cycle, ie Aluminium blocks the BH4 synthesis, plumb can also block some enzymes. Would it then not be easier, ie in my case where GST M1 is theoretically functioning, but not operating due to lack of glutathion, to first detox the metals by supplementing glutathion and once all metals are removed, then work on restarting the methyliation cycle, where no metals are blocking any enzymes?

Hm, thanks. I know that metals can also block enzymes of the methyliation cycle, ie Aluminium blocks the BH4 synthesis, plumb can also block some enzymes. Would it then not be easier, ie in my case where GST M1 is theoretically functioning, but not operating due to lack of glutathion, to first detox the metals by supplementing glutathion and once all metals are removed, then work on restarting the methyliation cycle, where no metals are blocking any enzymes?

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Hi, Bianca.

That does seem to make sense. If you decide to try it, I think that liposomal glutathione would be the best way to get glutathione into the cells. Also, I think it would be important to make sure there is enough B1, B2 and B3 present to support the glutathione reductase reaction, which recycles glutathione when it becomes oxidized.

From 1999 through 2004, I encouraged PWCs to try to build up their glutathione by various means, after I learned from Dr. Cheney's talks that nearly all his patients were low in glutathione. Quite a few people who tried boosting their glutathione reported that this did give them at least temporary benefit from the standpoint of improved symptoms, but if they stopped supplementing, the benefits disappeared. When I learned about the partial methylation cycle block upstream in the sulfur metabolism from glutathione synthesis, which was found in autism, I suspected that this was blocking the permanent recovery of glutathione in ME/CFS as well (and several years later Dr. Nathan and I were later able to verify this in our clinical study). But if one keeps supplementing glutathione, I think it will detox some heavy metals, provided the glutathione reductase reaction can keep recycyling it.

The reason I emphasize the glutathione reductase reaction is that about a third of the PWMEs who supplemented glutathione in those days could not tolerate it, reporting that it made their symptoms worse. We didn't understand why back then, and though I'm still not sure, I suspect that these people were not able to recycle the glutathione, so that it was lowering their ratio of reduced to oxidized glutathione over time, which would have shifted their redox potential in the more oxidizing direction. I think that this idea is supported by reports from some that it took a few days for their symptoms to worsen.

Glutathione reductase requires NADPH, and according to Dr. Cheney, PWMEs usually test low in this. So that's another piece of evidence that suggests that glutathione oxidation might be the explanation for the downturn experienced by these people. NADPH is made by the pentose phosphate shunt on the glycolysis pathway for metabolizing carbohydrates. B1 (especially in the more absorbable form benfotiamine) will stimulate transketolase and divert more flow into the pentose phosphate shunt. B3 is needed to make NADPH (the N is the niacin from B3). The glutathione reductase is a flavoenzyme, requiring B2.

If you decide to try this, I will be interested to hear how it works for you.

Thanks Rich. Will test mein Glutathion ox on Monday to see if I suffer from the same problem. I do take the Pure Encapsulation B complex which Freddd recommends (with Methylcobalamin, Metafolin). Would that be sufficent B's? It seems like B2 is rather low, so I ordered the active form in addition to that. It also does not provide for Benfotiamine.
I do take NADH tablts 12 mg once a day, would hat help with the reductase reaction?

Btw, I got some good fever last night, so my immune system seems to be reacting a bit again, wonder if this has to do with the apheresis. Have not had a fever in ages.

also, I do get Glutathion iv's twice a week and in between I do take S-Acetyl-Glutathion. Glutathion in te cell has gone up above minimum levels and is looking better, but I will def check the oxidised Glutathion.

It sounds as though you have the B vitamins covered. Yes, NADH should help. I've heard good things about S-acetyl glutathione, and it may work as well as (or maybe better than) liposomal glutathione for getting glutathione into the cells. I haven't seen any studies comparing them. The raised glutathione sounds good, and the fever might be a good sign.

Glutathione reductase requires NADPH, and according to Dr. Cheney, PWMEs usually test low in this. So that's another piece of evidence that suggests that glutathione oxidation might be the explanation for the downturn experienced by these people. NADPH is made by the pentose phosphate shunt on the glycolysis pathway for metabolizing carbohydrates. B1 (especially in the more absorbable form benfotiamine) will stimulate transketolase and divert more flow into the pentose phosphate shunt.
Rich

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Is there any other information on the role of the pentose phosphate pathway in ME? I initially got an enormous benefit from methyl-B12 (and a quick detox reaction), but d-ribose is the supplement that helps me the most. Another route to glutathione recycling? I also get over-stimulated from NAD supplements and subsequently crash for several days afterwards.

Is there any other information on the role of the pentose phosphate pathway in ME? I initially got an enormous benefit from methyl-B12 (and a quick detox reaction), but d-ribose is the supplement that helps me the most. Another route to glutathione recycling? I also get over-stimulated from NAD supplements and subsequently crash for several days afterwards.

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Hi, Kaffiend.

Ribose is also made in the pentose phosphate shunt, but supplementing ribose would not increase the production of NADPH, because ribose formation is downstream of NADPH production, rather than upstream. The fact that supplementing ribose helps you so much suggests that your pentose phosphate shunt may be running slowly, in which case the rate of production of NADPH would also be slow, which would suggest that glutathione recycling is also slow. I don't know why NAD supplements would cause you to crash.